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At A Loss On Next Step For Medical Care...

kvanrens1

By kvanrens1
in Doctors

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kvanrens1 Explorer
kvanrens1
Posted

My 8 year old daughter had a negative blood test (not full panel) for celiac disease several years ago and her biopsy (last year) was also negative. She was positive for gluten sensitivity by Enterolab and has been gluten free since April 15th of this year.

Her symptoms: Idiopathic growth hormone deficiency, failure to thrive, pancreatic insufficiency (fat malabsorption), gas, horrible stomach pain (3-5 times a week), severe lactose intolerance, constipation, and acid reflux.

Ruled out: Cystic Fibrosis, H. Pylori, structural abnormalities with pancreas, vitamin deficiencies, Swachmann Diamond syndrome, Turner syndrome, and others that I can't remember

She is on growth hormone treatment, creon for her pancreatic insufficiency, and acid reflux medication.

My last communication from her current GI doctor was that it was functional abdominal pain and that I should ignore her stomach pain. This is what caused me to look into the Entrolab testing. We have not been back to the GI since starting the gluten-free diet.

My daughter's response to the gluten-free diet has been amazing. No more stomach pain, constipation, or gas. She feels better and is much happier.

1) Does she need to see a doctor that has familiarity with celiac disease?

2) Should I just try to work with her current GI doc who has been so dismissive of her pain?

3) Should I go back to her first GI doc who was associated with our main medical research center in our state? We had problems with him too but don't want to make this post too long :)

At one point she was one five medications for her GI issues and is now down to two!

Thanks,

Kristy

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kvanrens1 Explorer
kvanrens1
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Posted

Sorry, she has been gluten free since March 15th.

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mushroom Proficient
mushroom
Posted

Welcome to the board, and congratulations on returning your daughter to good health!

There is no 'should' answer to this question, except you should do whatever makes you and your daughter comfortable. I would consider it preferable to have her seen by someone who has familiarity with celiac disease and gluten intolerance, which is apparently not her last GI. Someone who would know that she may not need the GERD medication any longer, for example, as this symptom frequently resolves on the gluten free diet. Also, someone whose judgment you feel you can trust :)

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